Skip to main content


Swipe om te navigeren naar een ander artikel

01-02-2015 | Original Paper | Uitgave 2/2015

Journal of Child and Family Studies 2/2015

Emotional Burden and Coping Strategies of Parents of Children with Rare Diseases

Journal of Child and Family Studies > Uitgave 2/2015
Rocco Luigi Picci, Francesco Oliva, Federica Trivelli, Claudio Carezana, Marco Zuffranieri, Luca Ostacoli, Pier Maria Furlan, Roberto Lala


Rare diseases are chronic and sometimes life-threatening conditions which differ from others due to less definite identity and more difficult clinical management. These peculiar features may hinder the parental adaptational process. The study aimed to compare the emotional burden and coping strategies of parents of children with rare diseases (CRD) with those of parents of children with chronic diseases (CCD). Quality of life, anxiety, depression, and mood states of 55 parents of CRD and of 56 parents of CCD were assessed by specific validated assessment tools. Parametric and non-parametric tests were used for multiple comparisons. Bivariate correlations were employed to explore the relationship between coping and emotional burden. Parents of CRD were more anxious, more confused–bewildered, and less active–vigorous than those of CCD (p < 0.001). Parents of CCD preferentially used some problem-focused and emotion-focused strategies (active coping, seeking instrumental social support, and positive reinterpretation and growth), whereas parents of CRD more often turned to religious coping (p < 0.001). The indefinite and uncertain identity of rare diseases hindered the adaptational process and appeared to impede the use of active coping, seeking instrumental social support, and positive reinterpretation and growth, that was correlated to higher level of vigor–activity among parents of CCD (p < 0.001). Conversely, the falling back on religious coping by parents of CRD didn’t result in improvement of any burden features. The main findings of the present study seem to suggest that both parents of CRD and those of CCD achieved good overall adaptation 1 year after child’s illness diagnosis, but they did so in different ways, showing slightly differences in emotional burden, probably due to the lack of available medical knowledge about diagnosis, prognosis and treatment of rare diseases. Therefore these findings stress the relevance of physician training and of providing information in the field of rare diseases.

Log in om toegang te krijgen

Met onderstaand(e) abonnement(en) heeft u direct toegang:

BSL Psychologie Totaal

Met BSL Psychologie Totaal blijf je als professional steeds op de hoogte van de nieuwste ontwikkelingen binnen jouw vak. Met het online abonnement heb je toegang tot een groot aantal boeken, protocollen, vaktijdschriften en e-learnings op het gebied van psychologie en psychiatrie. Zo kun je op je gemak en wanneer het jou het beste uitkomt verdiepen in jouw vakgebied.

Over dit artikel

Andere artikelen Uitgave 2/2015

Journal of Child and Family Studies 2/2015 Naar de uitgave